My journey… so far & Phyllodes

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My Health Update

The good news is that I had my 6 monthly ultrasound and chest x-ray and no sign of any lumps of mets from Phyllodes. That’s the good news.

I also met my new consultant at the Royal Marsden. Lovely chap who’s just returned from working in the US. He understood the frustrations with a rare cancer diagnosis and I was delighted that he’d taken the time to read my notes and know about ME.

He kindly spent time with me chatting about how I’d been and asking if there was anything I was concerned about. I told him that my boobs were still very painful (they always have been, but so much worse since Phyllodes, however probably nothing to be overly concerned about as I have such a good follow-up regimen).

I also showed him a rash I have had – I only showed him the rash on my wrists. (The poor radiographer who had done my ultrasound a few weeks earlier had been utterly surprised by the rash on my boobs and armpits. She looked genuinely shocked and horrified that I’d been waiting for several months to get a dermatology appointment…. more about that in the ‘bad news’ section.) My consultant didn’t know what it could be but thought it may be auto-immune. This then led me to ask him what he knew or suspected about a connection between Phyllodes and auto-immune illnesses. His response **raised eyebrows** “that’s very interesting, why?”. I told him that within our Facebook Phyllodes Support Group we had, and are still running, a poll asking members if they (or family members) had been ever been diagnosed with an auto-immune disease. Although only 150odd people have responded there’s a big percentage that have a link. Auto-immune disease is a spectrum of disease though and covers psoriasis to multiple sclerosis.

If you have an autoimmune disease, your own immune system attacks your body tissues. Normally, our immune system protects our body against infections caused by bacteria, viruses and other parasites. It recognises when something foreign enters your body and can usually get rid of it before it causes you any harm. But if you have an autoimmune disease, your immune system can make mistakes. Your immune cells start to attack your own normal body cells.

I left the Royal Marsden feeling assured about my Phyllodes health but also that they are assisting me and others diagnosed with Phyllodes in researching and answering questions for our Phyllodes Support Group. My consultant has subsequently emailed me to let me know he has chased the researcher who has a list of ‘basic’ Phyllodes questions to answer that I sent in a while ago. The answers to these questions will allay many fears for newly diagnosed Phyllodes patients. As it is so rare and there is little/no clinical research to rely on, I have suggested that they caveat any answers of concern with ‘in the experience of Royal Marsden’ or ‘to the best of our knowledge’ etc. It would be good to have some answers on behalf of the UK sarcoma medical profession. It is then aimed that the same questions will be put to medical professionals in the US, Australia and Asia. All four sets of responses will then become available to new members of the Phyllodes Support Group.

My consultant also advised in his email that he’s asked the research team to look at any links between Phyllodes and auto-immune diseases.

The bad news…

…back to the rash.

At the end of October the soles of my feet started to really itch. Initially there was nothing visible but soon there were small spots and dry patches. I did wonder if I had fleas or bugs in the carpet. I wish! Next a sore angry rash appeared on my wrists, the palm of my left hand and both ankles. I spent an age hoovering and rehoovering carpets, cleaning, dusting and generally convinced that it must be bugs. Convinced that the spread to my hands and wrists must be because I’m scratching my feet. I have been, as I’ve previously on my blog, very tired or fatigued for months/years but it had been getting worse. I know most of you see my facebook posts about my playing of tennis and going out… but you don’t get to see the posts that say I’m having an afternoon nap and didn’t wake up until midday and back in bed early or staying in most evenings.

Back to the rash. By early November I could cope no more. It sounded ridiculous but I was on the brink of tears trying to get a GP appointment asap for a ‘rash’. I wasn’t sleeping well as the itching was so much worse at night. My visual migraines returned and headaches for fun too.

My GP looked at the rash, said she didn’t know what it was and referred me to a dermatologist. A few days later she called to say that the referral had been rejected and I needed to try a rash cream. After a week of slathering myself in the cream, the rash had just spread and was as red and raw, if not more, than before the cream. I booked another GP appointment. This time she referred me again with a stronger note and saying the rash had now spread to my chest, armpits, groin, crook of my elbows and crook of my knee as well as my bellybutton… so basically anywhere that gets hot!

A few photos taken at the beginning of December:

I waited… and waited… and chased up my appointment… and waited… and was told that my referral hadn’t worked in the system… had to chase my GP to do it again… and waited… and waited… and then called my GP again (in tears)… and waited… chased the referral service… who referred me back to my GP… who referred me back to the service… I cried… who then took pity on me and gave me a reference number, my secret NHS booking password and the number of the dermatology practice… I called them and was told the earliest appointment was over two months away… I booked it… put down the phone and cried again.

I know it was ‘just a rash’ but it F’ing hurt and believe it or not I was worried about the rate at which it was spreading.

I missed an ex-colleague’s funeral. Although the GP had said it wasn’t contagious, she didn’t know what it was and I couldn’t risk attending a funeral where other cancer patients may have compromised immune systems. I’m sure Ally would have understood.

I was wanting friends, who’s daughter had been hit by a car in October and were ‘camping’ out in my local hospital at her bedside, to spend an evening with me so I could cook a homemade meal for them. Again I was too scared that should this be contagious I’d make their situation worse just because I’d like to cook for them. In the end I prepared a Friday night Indian takeaway meal of curry, dahl, naan, pilau rice, bhaji, poppadom, wine and beer. The food prepped and cooked with me in latex gloves. I also made some homemade soup for them for another night. I did seem silly asking them to call round on the way home from the hospital to collect it without inviting them to stay. I didn’t want to take the risk. I’d never forgive my selfishness.

Apologies to anyone else I’ve not seen, rain-checked or not taken up some fun outing but I hope now you’ll understand why.

Just before Christmas I again called the GP and this time insisted on seeing my old GP at the practice, who’s been my GP since the 1980s. He understood why I was so upset. Looked at the spreading rash, he also said he didn’t believe it was contagious but didn’t know what it was. He then wrote out a prescription that meant I had a drug that not only managed nighttime itching (generally eczema) but also had a sedative in it. However he didn’t think it would cure the rash. What a treat on 23rd December to have sleep!

Finally, 10 days ago, my appointment with a very kind dermatology specialist arrived. I should have taken photos at this stage – definitely the worst time. Diagnosis took just a few minutes. Her opening line was “oooh I think I know what it is. It’s very rare and you seem to have a severe case”. (Oh joy another rare thing for me then!). After consulting the computer and getting a second opinion from a colleague she told me that I’ve got an auto-immune disease, Lichen Planus. So far my Lichen Planus (LP) is only external.

She did think that the LP may be caused by something else wrong in my body which has caused the LP to flare. Blood tests ASAP. Possible damaged liver or hepatitis.

I left with a prescription for some uber moisturiser and a really strong steroid cream. She was concerned about giving me oral steroids as apparently what would be required for LP is super strong, has side affects and may be something that I have to continue to take. So creams first.

I felt relieved to know what it was and had full confirmation that it’s not contagious. But scared as to what it may be disguising.

As the itching was still horrendous (but being treated) my original GP also kindly did a new prescription for the sedative pills so I can sleep.

So it’s been a crazy time. Lots of time slathering moisturiser and steroid creams on my body. For the most part the rash is less angry, the blisters are rarer and for the most part I’m just scarred. The worst areas are where it started and first spread ie the feet and wrists. Some photos from earlier today:

I’m worried about some new itches and spots on my scalp and mouth ulcers and spots. From what I’ve read these areas can only be treated orally and if it spreads on the scalp may lead to permanent alopecia.

I’ve got my next dermatology appointment at the end of this month. Hopefully the creams will have sorted the external spots and the other itching is only in my mind! I’ll then get the results of my blood tests too.

I’m also feeling much better than I did when first I heard the name Lichen Planus, as I’ve found a fabulous support group on Facebook. It’s been reassuring to ‘chat’ with others who’ve been diagnosed. For the most part they talk about it taking months/years to clear and then returning some years later. I’ve also read about it being incurable but manageable. It was also been reassuring to hear that there are others who have loss of balance, visual migraines and fatigue – seems this may be something to do with what I’ve been experiencing.

I have been truly fed up though. I’m fed up of being ‘rare’. I’m fed up of having stupid and many symptoms. I’m fed up of worrying about going to see my GP. I’m fed up with trying to pick my ‘worst’ symptoms to tell the GP about rather than bother them with them all in the limited appointment time. Nothing seems to be specific or fit into the box. I hate being a GP botherer however I’m wondering if maybe I should have been earlier ie before LP showed up as a rash.

Anyway enough for now… thought you should know.

BTW I did email my Phyllodes consultant to tell him I’ve been diagnosed with an auto-immune disease. He’ll be adding LP to his research.

So there you go… the good, the bad and the ugly (well that’s evident from my photos!)